Mira not only gained almost a pound, but we get to temporarily quit cathing her! That's right, I said we get to STOP cathing! Joe and I agreed that we are going to cath her once a day to make sure she's not retaining urine, but if we find we're not getting a larger amount, then we get to stop entirely! Not only that, but we also get to discontinue her daily antibiotic.
She's doing so well in everything! Neuro doesn't even want to see us again for another three months! We have to go down for tests and things like that in between, but as long as we do not become concerned about anything, we will not need to meet with neurosurgery for a while!
Orthopedics does not want to proceed with casting and surgeries on her foot yet. They want to wait until Mira is entirely healed from her current traumas before they potentially cause more trauma to her body.
Urology is having us get a CMG done at the beginning of next month. This is a test that reveals the pressure levels in her stomach and bladder. As long as everything revealed is healthy, we can discontinue cathing for years! Until she's possibly 5 or 6 years old!
Physical therapy will be done in our home with the early intervention services, so we did not even meet with them yesterday at her appointment.
A few things we found out: Mira is eating 4-5 oz. bottles currently, and that seems like an awful lot for a less than one month old. We asked about the volume because she's not spitting up a lot or showing signs that would suggest over feeding. They said that while this may seem like a lot, that often the body requires additional nutrients to recover from everything she has been through. So she's not seeking too much food; she's just doing what her body is telling her she needs. And that's additional nutrients to help her recover.
Something else we found out, which may be the only slightly negative occurrence. Mira acts like she's falling all the time! She will wake herself up from flailing her arms out, she does it when she's perfectly still, when she's moving, when she's being held, when she's laying down, etc. No matter the situation, or how stable she may or may not be, she very often gets startled and flails her arms like she's going to fall. Joe and I have wondered if, with everything that could have possibly compromised her head, maybe her sense of balance has been corrupted? We asked neurology about it because we're not sure if this is simply her finding her footing in the world, or if something is actually off. Neurosurgery said that since it's so early, it's impossible to tell; but, there is something that spina bifida children can be prone to called spasticity. Spasticity involves involuntary regular spasms. So, only time will tell wether Mira is simply new to the world and startled at times because of it, or if she is actually having spasms that are beyond her control. We will see as time goes on.
In the mean time, she's doing incredibly well! Spina bifida clinic is so convenient, and I can't wait until the beginning of June to find out how her bladder and stomach are doing! We've also been nursing a lot more. I've been letting her eat on demand to build up my milk supply and get her more used to the breast. If she keeps doing as well as she is, we may be able to do away with pumping and bottle feeding entirely! Woo-hoo!
Our entire schedule has changed now! With her not needing cathed all the time, no antibiotic to give, and letting her feed on demand; it's like she gets to actually just be a newborn! She gets to eat when she's hungry, and sleep! No more waking her up to cath her or feed her or give her medicine! She can simply do what a baby is supposed to: eat, poop, sleep. End of list!
